Thursday, June 1, 2017

What would best support parents of adult children with developmental disabilities who’ve left school and fall into a black-hole of services to fill their day?

A six-week mindfulness group that taught parents to pay attention to their feelings and thoughts in an accepting, non-judgmental way, or a six-week group that gave parents information and support on how to get services for adults, many of which are wait-listed?

A fascinating study in the Journal of Autism and Developmental Disorders compared the two, and found parents in the mindfulness group reported significant drops in depression and stress, while parents in the information and support group did not.

“We forget that stress for these parents accumulates over time, and the demands become bigger as the child becomes an adult and service gaps are more extreme,” says lead investigator Dr. Yona Lunsky, a clinician scientist at CAMH who partnered with Developmental Services Ontario (DSO) and Community Living Toronto.

Yona worked with DSO to recruit parents who had applied for services into one of two randomized groups. The parents ranged from age 37 to 81. Their adult children were aged 16 to 40, with autism or other developmental disabilities. One-quarter of the adult children didn’t have anything to do weekdays during the study.

“The study looked at parents who came to DSO to access services, and who were focusing on their kids as opposed to themselves,” Yona says. “We wanted to see if we could teach a skill that doesn’t change the child’s situation, but changes how parents view and deal with it.”

Parents in both groups met weekly for two hours for six weeks. In the mindfulness group, they learned practices like the body scan—where they feel each body part, from toes to head—a three-minute breathing exercise, and a loving-kindness meditation. They also learned how to be more mindful with their child—for example, observing something about their child that brings them awe.

The goal was to teach practices that parents could use on the fly while juggling their many responsibilities. ”The demands in their day mean these parents are constantly pulled away from being aware of themselves,” Yona says. “We encourage them to use their senses to come back to themselves and pay attention to how they feel.”

It could be taking a moment before they get out of their car, or while sitting in a waiting room. “It’s just as important to notice ‘I’m upset, I’m tired, I’m exhausted’ as it is to notice ‘I feel good,” Yona says.

Self-compassion is a big part of the practice. Parents tend to have empathy for their children or the experience of other parents, “but they don’t take the time to have that same compassion for themselves,” Yona says.

“We’re teaching them how to be in the present moment, and how to be aware of a thought or a feeling without judging it. Perhaps today you notice some tightness in your chest or negative thoughts or feelings about your child: ‘I’m really frustrated.’ But if you’re not aware of that emotion, you can’t change your interactions or choices to help yourself. If you’re aware that you’re feeling frustrated, perhaps you pause, take a break, drink some water or do something else to take care of yourself. Maybe you ask someone to step in to help. It’s the idea of the parent putting on an oxygen mask in the airplane first, before putting it on their child.”

The parents who met in the information and support group listened to speakers on topics like adult day programs, residential care and mental-health services, person-directed planning and parent self-care.

Child care was provided for both groups and parents had a break for tea and a chat in the middle of each session.

Parents in both groups said the interventions were beneficial and they liked meeting parents in similar situations. Two years later, some parents from both groups continue to meet.

However, on a 14-item measure, parents in the mindfulness group reported significant reductions in depression and stress which weren’t seen in the information group parents. “Parents who did the mindfulness had an improvement from before to after, and they maintained that improvement 20 weeks later,” Yona says.

“We think it’s because they’re learning a skill that over time can help reduce stress and improve mood, and it’s not driven by success in your environment. If we feel happy because our child achieved ‘x,’ then our happiness depends on the child. But the issues these parents face—whether accessing a service or dealing with a behavioural or mental health problem in their child—don’t necessarily have immediate solutions.”

In the paper, the authors note that mindfulness “moves away from a focus on problem-solving to instead offer skills to cope with situations that are difficult and may not improve very quickly.”

Yona says next steps in the research include looking at virtual and other ways to deliver mindfulness training, what the best intensity of the intervention is, and how the makeup of the group influences outcomes. You can contact Yona at Yona.Lunsky@camh.ca.

1 comments:

This is SO interesting...thank you for writing about mindfulness and meditation, Louise. I've been interested in 'learning to relax' and 'living in the moment' for a long time...and for sure since Aaron, our son with Down syndrome was born. The usefulness of meditation has come very clear to me in the past few months, since I've been diagnosed with cancer. Focusing on my breathing has helped while driving to doctor's appointments or scans and when I'm sitting under that (darn) radiation machine every day. It is the only thing that keeps me together some days, it seems. Breathing and walking too.

I just wanted to chime in to agree with this concept of stress relief...for parents of adult children, young children, patients....well anybody can benefit. I clearly haven't reflected properly on this enough to write about it...but here's an enthusiastic YES. Would love to hear more from you on this...

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